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[FP] FW: GE - Icelandic DNA database

From: "ScanThisNews" <[email protected]>
Subject: [FP] FW: GE - Icelandic DNA database
Date: Mon, 28 Dec 1998 20:00:29 -0600
To: "ScanThisNews Recipients List" <[email protected]>


[Forwarded by request]

  -----Original Message-----

From: Wolf [mailto:[email protected]]
Subject: GE - Icelandic DNA database

This is from the genetics mail list. Can you help to circulate as they
are asking for foreign intervention in the form of an e-mail campaign?
I suspect that once governments can point to one country that has this
sort of database in place it will be used as an example of what the rest
of us should be aiming at...ycchhhh!!!

  ------- Forwarded message follows -------

From: genetics <[email protected]> (by way of genetics
<[email protected]>)
Subject: GE - Icelandic DNA database

From: Herbert Mehrtens <[email protected]>

>The controversial health database bill has been passed in
>the Icelandic parliament. It was approved by a vote of
>37 in favor, 20 saying no, and 6 MPs absent. Before the
>bill becomes a law it must be signed by the President of
>Iceland, Mr. Olafur Ragnar Grimsson.
>Several wide-ranging changes were made to the bill in
>the last few days. Personal protection was decreased by
>stating specifically that the licensee use unencrypted
>health data. Even more blatant is the new provision in
>the bill that the database contain genetic information.
>Formerly it was to contain only health information from
>hospital charts and doctors records.
>For those who have been following the discussion,
>it will be of interest to know that the bill is in
>fact now a new bill--a result of the collusion between
>the Ministry of Health, the government and deCODE
>--and the database has now become the Icelandic DNA
>-collection bill or the pharmacogenetic wonderland
>bill instead of a health database bill (see also letter by
>Bogi Andersen to the editor, Science, Dec. 11, 1998,
>p. 1993).
>If there was any doubt as to whether an individual will be
>personally identifiable, now it is certain that every
>person can be traced, either individually or through
>pedigrees, by using genetic tracers or DNA sequences,
>in the near future. The consequences of including
>genetic information are momentous. Therefore:
>1. The database bill should not be made a law nor
>should it be implemented, because of ethical, privacy,
>consumer and human rights concerns.
>2. If there is to be a health/genetic database in spite of
>these concerns, informed consent and independent
>ethical review committees are minimum requirements.
>The Icelandic Research Council which supported the bill
>has abruptly withdrawn its support following an emergency
>meeting on Dec. 14 because of the inclusion of genetic data
>in the proposed database and infraction of free scientific
>Likewise, the former President of Iceland, Mrs. Vigdis
>Finnbogadottir, who sat on the Board of deCODE has
>resigned due to conflict with her role as President of
>UNESCO's World Commission on Scientific Knowledge
>and Technology.
>For further details please refer to the website of Mannvernd,
>the Icelandic Association for Ethics in Science and Medicine,
>for news update in English. Also consult a graphical presentation
>of the views of over 50 agencies and experts which submitted
>highly critical opinions to the Health Committee of Althing as
>the 2nd version of the bill was debated this fall; to no avail
>as these opinions were callously ignored by the government
>majority on the Health Committee:
>Also see the associations' English language home page:
>deCODE's representatives have unsuccessfully
>tried to rebuke our information in the internet news
>discussion groups. Thanks to DENDRITE's David Oaks
>and others this has been answered in an informed and
>decisive manner.
>deCODE's statement that personal information will be
>anonymous is false. Anonymous means that names and ID's
>have been eliminated. The database will include ID's
>that, although encrypted, can be used to trace individuals,
>as explained by encryption expert Ross Andersons' report:
>Most experts consider the database information personally
>identifiable, which means that informed consent should be
>sought, according to international ethical standards. These
>concerns become magnified once genetic data is included.
>An ethical committee was introduced in the latest version of
>the bill. Yet it is not specified who shall sit on the committee
>and it is strongly suspected that the Minister of Health will
>appoint the licensees' representative on the committee. Moreover,
>that provision speaks volume for the fact that the government
>does not want to recognize the irreducible bond between consent
>(informed or otherwise) and ethics committees. By passing the
>law the government violates sound principles of scientific ethics
>and human rights.
>Also, parliamentary majority spokesmen have dicussed the
>possibility of including prescription information from
>drug stores in the database! This is not specified in the bill
>but could be in later revisions, according to newspapers
>supporting the government. This would be similar to turning
>a gold mine into a diamond mine.
>The Icelandic database bill has been considered by numerous
>foreign experts (see opinions on Mannvernd's website) and
>is considered in the Economist (Dec. 5-12, 1998) and New Scientist
>(Dec. 5th, 1998) to set a precedent of how medical and genetic
>databases in other countries could be constructed and misused in
>the future.
>This biotechnological disaster in the making is of international
>concern and importance. We consider ourselves being on the
>outpost of this battle for users' rights in new genetic research
>and important biotechnology developments and we need all
>the support we can get.
>We are grateful for any help we can get. Although the bill
>was passed by the parliament on Dec. 17, it needs to be signed
>by the President, whereafter much work needs to be done, regulations
>written, agreements made with the licensee etc.
>Foreign intervention at this moment may have a crucial
>effect upon future course of events.
>Please write letters of concern/protest to
>Prime Minister Mr. David Oddsson,
>E-mail: [email protected]
>Fax: 00354+562 4014
>Minister of Health Ms. Ingibjorg Palmadottir
>E-mail: [email protected]
>Fax: 00354+551 9165
>with a copy to Mannvernd,
>yours sincerely,
>Petur Hauksson, chairman
>Icelandic Mental Health Alliance (Gedhjalp)
>Tryggvagotu 9
>101 Reykjavik
>[email protected]
>[email protected]


Fenris Wolf


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